The Sibling Perspective

Rhandyl:

 Hey y'all, it's Rhandyl with Raising Disabled, and today we have , an awesome guest on.  A sibling of a disabled child, and , it's an awesome perspective. And so, first off though, Deanna and I wanted to kind of catch You guys up on how our last few weeks have been,  so we're in West Texas. We're not far from the panhandle of Texas, and all the fires that happened up in the panhandle,  it was the biggest fire  in Texas history and..

Deonna:

It was like over a million acres. 

Rhandyl:

Yeah, it was a lot. And my family, they all live up there, that's where I'm from, and so luckily the fires did not get to the town that I'm from, Shamrock, but a lot of those northern towns, it did, and so they had a lot of people coming down to that area for shelter, and things like that, places that were getting evacuated and it was, at one point, the winds had changed and the fires were coming there uncontrolled and were headed that direction and in my family, they farm and ranch and so that's their livelihood and so it was, it was a big deal. I mean for everyone but especially, for us. So we had a day there where it was a little touch and go back home, and I felt helpless because I couldn't go help. But but I think everything is at bay now and there's just a lot, there's been a lot of loss and, just keep everybody in your thoughts and prayers up there and. 

Deonna:

Well, and it was crazy because the wind was blowing the smoke even where we live, which is  pretty far away and 

Rhandyl:

Yeah, it's like a couple of hundred, three hundred miles from where it started. Yeah, and that next morning, you could smell all the smoke here. 

Deonna:

Yeah, it smelled like someone was having a bonfire in your backyard and I can't imagine how bad the smoke was there. , it just would be horrible.  

Yeah, my husband got to fly it, and I mean it was crazy because you're flying the perimeter and I don't think it's supposed to actually take that long to fly a fires perimeter and it took them hours to go all the way around it. So yeah, it was it was nuts I saw some pictures they took and I was like, oh Yeah, bad. It was really bad.

Rhandyl:

But, other than that, it's been a little chill, actually,  no vacations, but Remi's had a few little,  outbursts or whatever, but she had this random rash show up and we still don't know what caused it. It was like these whelps and it lasted for like 12 hours. I honestly, maybe it was something she ate, I don't know. We tried to write down everything that she ate that day and then I don't want her to eat it until she's at home because it happened at school and then it just got worse after she got home but, What about you guys? Has Allie been being a toot toot, or is she being good?

Deonna:

Kind of. Yeah, she's, it was okay my parents were here, but yeah last week she, I think it was Friday, she had, I would call it a very minor emergency at school, but it was her first one and  our sub nurse, Heidi was with her that day. Of course, Heidi's like, are you kidding me? But she handled it really good. But yeah, it's just crazy because these things happen at the house all the time and you're kind of like, oh, crap, but when it happens at school, it does hit different because luckily she wasn't in front of other kids.And so, we're not going to have to pay for some therapy for a bunch of kids. But she basically was in the nurse's office, which is a good place to be. But yeah, it's just hard because when their oxygen dips like that and you're not at home and you're on a tank, it's just because Allie's usually not on oxygen during the day when she's awake. But yeah, you get on the tank and I think she was on like eight liters, which is a lot. It’s not going to last long. Yeah. And so her nurse was like, hey, we're going to have to make a decision real quick and come home. Cause she's blowing through a tank of oxygen. Yeah. And usually when she has a little dip, she'll come right back up to the 90s, which is where you'd want to be, but not this time.

And so they came home and we took her to the doctor and everything, but it's just so hard when you have a kid, either like Allie who can't feel anything or you have a kid who can't tell you what’s wrong and either one of those are so hard because you're like, okay, something's not right. I don't know what, like, what is it? So, yeah. You Guessing game. It's like trial and error. Yeah. Yeah, really. That's kind of how it felt.

But we still got to do some stuff this weekend. She got to go watch her brother play basketball and that was fun. And then we went and saw,, so I'm a huge musical nerd. I love all the musicals.You're not like that, right? Like. 

Rhandyl:

That's not really, no.

Deonna:

Yeah. I love them. And we go see most of them that come, and our town actually gets a lot of good musicals because we have a really nice theater now that they all come to. But we went and saw Hairspray, which is so fun. That's fun. I have, I have wanted to see that one. Yeah. It was funny, it’s a little more risqué than I remember it being. So we're sitting there and me and my mom are like half awkwardly laughing during parts and Allies clueless, like doesn't know what's going on. So that worked out, but now she is obsessed with it. And like tonight, she's already watched the movie again. So she loved it, but yeah, it's a fun one, but it was kind of just one of those deals where I'm like, is she going to feel okay to go? And you're just like, yeah, I don't know. I'm sure a lot of parents can relate to this because you're like, I don't want them to just sit at home when they're right on that line, not being okay, but then I don't want to take them and be stupid. So it's just this difficult decision with that, but she kind of rallied and went with us. And so that was good, but yeah, it's just, it has been kind of a fun, not, not so fun week when my husband's out of town. It's just a little harder. Double the work.  And even if you have nurses there and everything, there's no replacement for. Just no replacement. You can have a lot of people there helping you and whatever, it's, it's not the same. And so, especially the physical side of it and things like that, it’s just.. Yeah, when our husbands are gone, it's hard, but I had help from my parents and everything. It's just been a wild week. Today was one of those days. I was just telling you, you either like, should I go in my room and cry, have a panic attack or just suck it up? And you just have to suck it up, like you don't have any other choice. And so it was crazy. 

I have strep again for, I would say, I think I've had it two times already, just in 2024. Like I had it,  I had it six or seven times last year. And so I need people, I need adults who have had their tonsils out to let me know, like truthfully, how horrible it actually is because everyone's always like, it's terrible. Oh, you'll, feel like you're going to die. But, I’m sick every 30, 40 days for strep. And so yeah, I’m considering it. So many antibiotics. I know my insides are trashed because of taking so many antibiotics. But yeah, my doctor was like, these aren't even going to work anymore. Like, oh gosh,  like, you've taken so much. And so, yeah, I need other parents who have disabled kids. Like if you've ever had that surgery, I need to know what to expect, because I'm seriously considering it. But ot's hard when you are a parent like us because when would you have it? I don't even know..

Rhandyl:

Like how would I plan that around everything else? 

Deonna:

Yeah. When can my family go without me? Really, because I've, from what I've heard of the tonsil one, it's, you're down for the count for at least a week or something. But yeah, it, it really hasn't been the best week ever, you just keep on going. 

But we did have fun the other day we got to record with Amanda Griffith Atkins. And so that's coming out. Yeah, it was fun getting to just meet her because I feel like every disabled parent looks up to her and so that was fun to get to meet her. 

Rhandyl:

It was so much fun and yeah, we hope you guys tune in, in a few weeks, it's going to be, it's going to be a good one.

Deonna:

She definitely said some stuff that I'm like, Oh my gosh, I can't believe I just, the way I've been thinking and how that was maybe not the best way to think of things. So I'm excited about that. What else is going on? 

Rhandyl:

Well,  I think I mentioned last time we finally got a new nurse and she's been training, and she actually got to start training at school this week. That's good. Yes. So hopefully, starting in April we can get everybody on a routine schedule. 

Deonna:

Is she training with your other nurse? Like is your other nurse Yes. Teaching her? 

Rhandyl:

Yeah. Yes. Yeah, she's going to school with both Remi and Remi's regular nurse that’s been with us for a while. And so that's been good and she's trained a lot at home already. So I was at the point to where I was comfortable with her if my husband and I were to like go do something really quick. Yeah, but we wanted to make sure she was okay with it, and she said she was she was comfortable.

And so we literally get in the parking lot and we get a call and Remi had a mucus plug and a blue spell and she had to bag her with an ambu bag, but she did great. She, she stayed calm. She we talked her through it. I was like Remi, you're just testing her.

But it was also one of those relief things. Yeah, she almost died without us there but they handled it and she did it and now that nurse, she doesn't have to dread that, it's happened and it happened literally the first time we left her alone with Remi. So, that's done and now she knows how to do that under pressure, and we’ll feel comfortable. It's just one of those things  you just hope and pray that everything works out and they're good under pressure. So anyway, that was one wild thing that happened this week.

But I feel like the last few times we've been talking all about snow and winter, and it's been like spring and hot here a lot, and all of our trees are blooming. Yeah, I know. It's been nice to, we actually went on a walk over the weekend. Yeah, so  we've been enjoying that outdoors. But this is only big the beginning of March, so there's always gonna be that what do they call it the Easter snap or something? 

Deonna:

It will snow again on Easter Sunday. It always so cold on Easter. And you're like, I just bought a cute dress, it's  hort, and here we are, I can't wear it now because, that happens all the time.

Rhandyl:

 If you don't like the weather, wait five minutes and it'll change because it's it's so true though because you never know.  

Deonna:

It’s so crazy. It sounds like we both had some fun moments with our kids, it's it's reality. It's what happens. A day in the life. Just another day in the life. Yeah. Yeah, We don't talk about all this stuff because like we've said many times, not everybody can handle it and so this is our place where we tell the truth and it's not always pretty, but we do our best and that's just all you can do, but yeah, we're excited about this episode today. And it was an emotional one to record for sure. Probably the most emotional one I've ever had to go through.

Rhandyl:

Oh yeah, the first one that I really broke down. 

Deonna:

Yeah, there may have been tears. I'm trying to remember. 

Rhandyl:

Yeah. There definitely were tears for me. 

Deonna:

And I hate, I hate it when there's tears with me, but yeah, it was just an emotional one, but it's a good one. And I think it's important for parents to listen to, too understand how their other kids are feeling, as they go through this experience of raising a disabled child. So here we go. 

Rhandyl:

Hey, y'all. Today we have on Stephanie Dotson. She's an occupational therapist we actually are co workers, and I just met you, what, a year ago? One of my daughter's therapists had told me you, you need to talk to Stephanie, she grew up with sibling that had pretty severe disabilities, and so we've only talked briefly about that but I've had you on my mind especially since we started this podcast to get the sibling perspective. Yeah, so here you are, and we're happy to have you on. If you just want to introduce yourself your family, whatever you want to tell us about yourself.

Stephanie:

Yeah. Well, thank you all so much for having me. My name is Stephanie. I am a West Texas girl born and raised. I live in Lubbock now. I am an occupational therapist which is very much due to how I was raised with my sister, but we'll get to that. I have been married to my husband for 10 years. We have two kids- a six year old little boy and a three year old little girl. 

Deonna:

So we are going to talk about your sibling and you a lot and y'all's relationship and everything. So were you the older or the younger sibling and what was your sibling's name?  

Stephanie:

Her name is Abby, and I was the older sibling. I am four years older than her, and she was my only sibling. 

Rhandyl:

Okay, so tell us about her diagnosis. Was she born with it, or was it acquired were there prognoses involved?  

Stephanie

Yeah. As with most, there wasn't really a cut and paste answer. I was four, so I don't remember life before her, but my mom had a typical pregnancy and delivery from what I know, they thought they were bringing home just a typical second daughter. Because it wasn't so much that you could notice it physically. It wasn't like cerebral palsy or down syndrome has characteristics or like a trach or a vent. It didn't start that way. 

And so as that first year was going on and she wasn't hitting those developmental milestones, it started becoming concerning. And my parents started asking questions and trying to take her to specialists, but, back then there just wasn't as much information. She was born in 1995. Okay. And so, around that time, there just wasn't much out there. Right. And my mom has told me later on that she, I hate to say it, she was shamed a lot for it. “She's acting that way because you're babying her, or you're not disciplining her the right way, “or “she's not meeting these developmental milestones because you're doing everything for her.”

Rhandyl:

Yeah, their only answer was- It's your fault. 

Stephanie:

That it's your fault. Because they didn't know. And it wasn't just like an obvious thing, but she wouldn't turn to the sound of her name or she wasn't rolling and sitting. She wasn't babbling like you would think that she would, a typical baby. 

And so, about the year mark, it was like, something is really wrong somebody has gotta help us, and it was from her one year to when she turned four, that they just went back and forth to all these specialists you've gotta help us, like, all this testing and everything, and finally when she was four, they gave her the autism diagnosis, which was a lot harder to come by back then. And then they also gave her the MR diagnosis, which is now intellectual disability. So she had very severe intellectual disability. She never really got past probably 14 to 16 month old developmental level. 

So she was non verbal her whole life. She was never toilet trained. She needed help with all of her daily living skills, dressing, bathing, grooming, things like that. Motor wise, she was super delayed. Went through all the walkers and gait trainers and things, but she did eventually get to where she could walk and run. Oh, wow. Oh, wow. That's cool.  Basically, she became like a giant toddler. Yeah. And so that was hard. It was hard. When you, when she would throw a tantrum or like couldn't get her way, like the older she got and the bigger she got, like the more problematic that became.

And so she had those two diagnoses. She, as she got older, they realized she had visual and auditory impairments. She definitely had a lot of sensory processing issues going on that I understand a lot better now that I'm an occupational therapist. But the biggest thing with her sensory processing was that she didn't really feel pain. And so that was that was really weird. Oh, that's crazy. She would engage in a lot of self injurious behavior because she couldn't feel it, so she would bite her arms and make it bleed and scab over, or bang her head against a wall or throw herself onto the concrete and she didn't really have those pain receptors to let her know oh, I shouldn't do that.

And so, those were, Pretty much the diagnoses for the majority of her life and okay, so I mean she had a good prognosis, we honestly thought there wasn't a reason she wouldn't outlive all of us Like yeah, she was just very developmentally delayed. And so my parents and I had talks of like, when they can't take care of her what role do you want in that? And all of that type of stuff. But we had every reason to believe that she was going to outlive all of us. Yeah. Right. 

It wasn't until she hit puberty that she developed epilepsy and that's kind of when things started changing. I would say for the majority of her life she had severe special needs, but I wouldn't categorize her as medically fragile. 

Deonna:

Okay, like it wasn't dangerous things to that point. 

Stephanie:

Correct. It was just taking care of a toddler. Yeah, and how exhausting that is. If you have a toddler in your home, that's how it was like nobody slept. Nobody. It was just kind of chaotic.  But when she developed epilepsy, that's when the medical stuff came in. Right. And they try to keep it under control with medication and stuff. But as with someone that's non verbal and can't tell you how the medicine makes them feel, It was just so much trial and error. But the seizures just kind of kept getting worse. Yeah.  And when she was..

Rhandyl:

When did she start, what, how old was she when she started having them? Do you remember that?

Stephanie:

I know that she had hit puberty. So I want to say she was probably like 13ish. Yeah. And so they just  progressively got worse for a couple of years, but I mean we're manageable but when she was 16, she had a really big seizure at school. It was nearly 10 minutes long, which if you know anything about seizures, that's an insane amount of time to have a seizure. And that was just that was  the beginning of the end. They rushed her via ambulance to the hospital and it was a very fast six months decline from that point to when she passed.

She eventually lost the use of her legs and then lost the use of her arms and then oral motor control was gone. So that's when we got the g-tube and then just as months were progressing,  her internal organs were starting to shut down. We were starting to finally see that she was in a lot of pain, and that was a big deal for her, so we knew that it was like a massive amount of pain. Extreme. She didn't show that before. Oh, wow. And so, there were a lot of hospitalizations in those six months, and trying to understand, we got like a vagal nerve stimulator implanted and that didn't seem to help the seizures. 

So in those six months our house got transformed too, like we got the hospital bed, we got the Hoyer lift to be able to, yeah, to carry her to and from the living room. Remodel the bathroom so that we can have a rolling shower chair that will go in there. And so the type of special needs she had drastically changed at that point. Eventually got private duty nursing, all of that stuff.

And then finally got to a point where she was in so much pain that we brought in hospice. And she passed less than 48 hours after finally getting on the good pain medicine to finally be at peace. And it was quick. So she had severe special needs her whole life, but it was drastically different at the end.

Deonna:

It changed. Yeah. Yeah. Wow. Oh my gosh. That is that's, I'm sorry, I've lost a sibling and he was my only one too, and that is just  difficult. I get it. You said you don't really remember life without her before, unfortunately, you know about it now, and that is a pain that I get, but so did you realize from being a little kid okay, my sister is not like everybody else? Do you have a memory of being like, wait, she's different than everybody else? Like the first time you realized it?

Stephanie

I don't really think so. That first year, there were so many, really up until she was four, so I was eight by that point, we spent so much time going specialist to specialist, doctor to doctor, trying to get answers. I don't remember a time before that. Yeah. 

Deonna:

Yeah. You were, I know that's how my son, he's just with us at all these appointments. And you think about how that's affecting him to be at the doctor's office for not himself, but he's in there all the time.

Rhandyl:

And they're about this, they're the same age difference, right Deonna?

Deonna:

Yeah, they're the same age. Allie and Cole. Yeah, my son's four years older than my daughter and she's the disabled one, the younger one. Okay. So you. Don't remember your parents changing because they had a disabled child, because that was, you were so young probably, but do you remember your parents having this massive change when she started having the seizures and everything, or were they just the same as before?

Stephanie:

I mean, honestly, for as long as I can remember they were so tired. They were so stressed and they were so tired, and spread thin, and I understand a lot more now, I think, that I'm a mom, of just how much guilt my mom carried. Especially because of some of the things that people were saying to her. But just the pressure to wanna make things right, or make things better. If I just tried a little bit harder, surely it could get better. 

And we tried, like, all the PECS communication boards, and I remember my mom would sew weights for my sister to wear on her ankles and her feet to try to slow the tremors down. She would make them herself because we didn't ever have much money growing up. And there just weren't, there weren't as many resources.You couldn't just get on Amazon and get it back then. So my mom was just spinning her wheels all the time. So I just remember that everybody was just always so tired.

For sure. And, every outing is a very big deal and everything was very expensive because we didn't get on the CLASS program for a long time. So the CLASS program like pays for a lot of supplies. So she needed diapers for her whole life. She needed caregivers that were really expensive, but we weren't qualifying for nursing or anything back then. So I just remember them being spread really thin. Yeah.  

Rhandyl:

And the CLASS program is, it's a waiver program through the state of Texas. Yes. And a lot of times there's a  long waiting list on there. 

Stephanie:

Because honestly, people have to die for other people to get on it. Right.  

Deonna:

I heard it's like a 15 year waiting list or something. I don't think she got it until she was like 11 or 12, honestly. Yeah. And when she started having seizures, I think that just added to the and  like guilt of sending her to public school. With that, but again, it wasn't enough to qualify for a nursing. It's just, hoping that people will care for your kid as well as you would.

Rhandyl:

Yeah, I can see them. Yeah, because I was wondering if she had a private duty nurse at school whenever she had the 10 minute seizure? Yeah, because she probably didn't qualify.

Stephanie:

She didn't. Yeah. But that decline in the six months I can go back and look at pictures and see that my parents aged in those six months. Oh, yeah. I believe it. And we finally had nursing in the home, and so I think maybe that alleviated a little bit of pressure of trying to watch her 24/7 once she wasn't breathing well or eating right, but there was definitely a very noticeable change as it became more medical.

Rhandyl:

How was that to have nurses in your home after all those years of not? 

Stephanie:

So I actually was in college by then. Oh, you were? Okay. I stayed in Abilene just cause I wanted to be near her and now I can see that was just a grace of God that he didn't move me to some other city. 

And so we actually redid my childhood room for her and made that her medical room. And so I was pretty involved in that, and doing all the painting and the rearranging and getting it set up for her. Yeah, I'm sure that it was a really big adjustment for them.  

Deonna:

I'm just thinking of your mom and your dad back in the nineties, and I'm just like, Oh my gosh, because now we have podcasts we can listen to, we have hashtags on Instagram where we can look up all these other parents in the world that have the same thing as our kid, the resources are better it's just so much easier to have a disabled kid.

I'm not saying it's easy, but it's, yeah. Oh, there's a lot easier than it was in the nineties. Yeah. There's way more support now.  I, oh man, I feel for them because they were just raising her in that decade was hard. Like any decade pre internet made it harder basically. 

Rhandyl

Yeah. Just in my seven years with Remi, I’ve noticed a big difference in inclusion and all sorts of things even in just the short seven years. So, did your mom have a support group? Did she have a community? Did you have any other friends that had siblings with special needs in Abilene?  

Stephanie:

So, initially, no. But my mother is a saint. And she realized that it was lacking and she was like, there's no way that we're the only family that's dealing with this and there's nothing out there. So she founded an organization called King David's Kids, it still runs in Abilene to this day, even though we're not there. And it was basically just a support group for families of children with special needs. But she worked with a lot of the students at Abilene Christian University. So, we would meet once a month and my parents would lead the parent portion of it- of just, kinda, you're not alone, let's all join together or whatever. Yeah. 

The sibling group was led by a bunch of psychology students at Abilene Christian and so they kind of used us as their dissertation. Yeah.  

Rhandyl:

So what year did your mom found this? I was in How old was your sister? I was in 4th grade. How old are you in 4th grade? Like 9 or 10? Yeah. So she's probably 5 or 6. Oh wow. That's cool. And the speech therapy grad students at Abilene Christian were the ones that stayed with the special needs kids. And so they got hours doing that.

Deonna:

Right. That was smart that she used the college. 

Stephanie:

Yeah, so that it was free. Yeah, she's a very smart lady. She's tricky. Yes. But that definitely became our people. My closest two friends growing up both were siblings of  People with special needs. They're both girls, and we all only had one other sibling, and they're pretty severely disabled. And to this day, they're the people that probably understand me more than just about anybody. Oh, for sure. 

Rhandyl:

Wow, that is, yeah, your mom was a saint, because that was..

Deonna:

That's a big deal. Well, and she probably needed that, and, she probably set that up because she needed it and then everybody else needed it too, so, it, yeah, she wasn't the only one out there. It helped her, but then in the process, everybody else, so, pretty cool.

Rhandyl:

So, as the older sibling, how would you describe your relationship with your sister? 

Stephanie:

Extremely protective. My parents used to joke that I would go to doctor's appointments and be so mean to the nurses and the doctors. Because I was like, I would have more questions than they did and they would go to probe her with something or something and I would be questioning their every move like, “why is it that you're doing that?” “What are you trying to say?” “Is it necessary?” Like, “how long have you been a doctor?” From my very earliest ages..

Deonna:

You could get away with those questions. 

Stephanie:

Oh, for sure. And I did. I think that actually plays a big role in me transitioning to be a marketer now. Just because I'm very comfortable talking to doctors, questioning doctors, advocating.

Rhandyl:

Yeah. So we didn't get into that. So Stephanie's an occupational therapist, but  you do marketing for a home health pediatric therapy agency. 

Stephanie:

Yeah. So in the last year, I transitioned more to a marketing role. Yeah. It was definitely a God thing. But the more I do it, I mean it is literally just Advocating for the families in Lubbock of how you can get the services you need, what diagnoses means that you should go to this agency or get this service it's a big passion of mine. 

Deonna:

That's so cool. Yeah, I love that. I'm just seeing you like questioning a doctor are you stupid? Do you know what you're doing? I love it. That's about it. It's Asked, did you wash your hands? I can just, I can see them sound being, yeah, I did not see that. Hand sanitizer. Yeah.  , I, it's like I asked the same questions, but they don't think it's cute when I'm doing it.But if a fourth grader was doing it, they Right. I need to tell Cole to ask all the awkward questions from now on so that I don't get in trouble. Yeah. But that's smart. 

What was it like being with your sister in public in the nineties and early two thousands? I know what it's like for us now, so I can't even imagine what it was like for y'all. 

Stephanie:

Yeah, remember she was just like a giant toddler. So it's not like it was a super medical thing that people might be a little bit more like empathetic to. Huh. She was extremely mobile and she was very fast. And so eventually we got to where we would put her in what's basically a wheelchair, like when she outgrew strollers, just to be able to like, fasten her in. But it was kind of like taking an 18 month old out. Sometimes there were hysterical tantrums on the floor.  Sometimes we were happy go lucky as long as we had a snack. 

And from my youngest years when people would stare at her,  I would, much like I would in a doctor's office. I, especially if it was an adult, I would be like, “you're staring, so you must have a question.” “Can I help you understand something?” Or "your child is staring at us. Is there something you should talk with them about so that we can move past this? Because we're just minding our business.”

Deonna:

That's, yeah. So you would just call them out? Oh, yeah. Love it. Well, they ask us super personal questions. So my son said he wants a shirt that says, “can I help you?” And I'm like I may make you that because that's funny.

Stephanie:

And of course like depending on the setting, if we were just out at the mall It was one thing, but  you know as I started playing sports in middle school and high school. I did want her to come and sometimes she could come and sometimes she couldn’t. But, there were times that I was embarrassed and I didn't know how I was going to explain it to people because my two closest friends, they didn't go to my high school. Oh, yeah. And so I didn't know anybody in my school that was really going to understand. And so I of course struggled with being embarrassed, not knowing how to explain it. But honestly she was just one of my best friends, and especially as I got older, it was like, this is us, we're a package deal.

Deonna:

Oh, I love that. I've wondered about the embarrassment factor, because, and in your situation, and in Rhandyl's son's, and my son's you're not gonna be unnoticed. Everybody's going to see you, they're going to notice you, and most people are going to stare at you the whole time you're in their presence, like in a room or whatever. And so, the confidence that our kids have to have as the sibling is crazy because they are going to be watched 24/7 and, it's tough. If you don't have the right personality for that, it can be probably very like suffocating or something, 

Rhandyl:

Yeah, so what were the some of the hardest parts about being a sibling of a disabled  child? I know you don't really know  any different, but…

Stephanie:

Yeah, but I did compare a lot. I compared a lot to my friends of like we didn't really have people in our home a ton. Just because if she got off her schedule, she really struggled. Yeah, and then everybody else struggled. And it was just honestly like too much to explain. And we didn't really sit down and have family dinners because my parents didn't have time. And she was just like, literally running around in chaos. So we mostly ate out of a fast food bag growing up so evenings looked different, holidays looked very different, vacations looked very different.

I would say, one of the things that helped me a lot, and it did help because these two friends of mine understood, but we started going on vacations and bringing them with us. Oh, that's smart. The typical sibling and the special needs sibling they just can't interact the same way say you're going to SeaWorld or to Six Flags. And so, as we got older, my parents would take those two friends of mine with us. Oh, that's cool. And so it wasn't like I wasn't ever embarrassed in front of them. I didn't ever have to hide it because they understood. And so that was really big. But then I also had that just a little bit of normalcy on vacation that I wouldn't have had otherwise.

Now, I will say, my sister got to go to the front of every roller coaster. Were you jealous? 

Well, I got to go with her. Oh, nice. Yes. We would get in the front of the line, and get on and then it would be our time to get off and the little guy would be like, okay, get off. And I'd be like, “you make her get off.” And so they wouldn't make us get off and we could just ride it as many times as we wanted. Oh my gosh. There are definite perks. You gotta work it. Yeah. I think that's awesome. But that was helpful. 

Deonna:

That's funny. So, I've talked to my son about this a lot, but did you ever feel neglected or invisible because of your sister's disability and just the attention that she required every day? 

Stephanie:

Yeah I don't at all think it was anything that my parents intentionally did or said or didn't do. I think it was just from a very young age, I became really independent. I could pretty much take care of myself, and for the most part, I kinda took on the role of a third caretaker for her.

Yeah. Yeah. And just kind of suppressed my own needs. I didn't want to get in trouble or step out of line or do anything that was gonna cause more stress than they already had. Yeah, that was just something kind of in my personality, I think, that I took on. But, I mean, it's impossible to not notice how much effort and time and energy your special needs sibling is taking. And my parents tried really hard, and they didn't miss a single basketball game of mine or anything like that. Tried to spend very intentional time with me, but you would be naive to say that it wasn’t weighted one way or another. 

Deonna:

Oh, yeah. Oh, yeah, for sure. Of course. 

Well, and it's, yeah, it's nothing against your parents. They were doing their best, and yeah in our house, that's how it is. Me and my husband know my daughter takes so much extra effort to take care of. And you can try to do the special things and make the other one feel important. And they are just as important, but yeah the math is just not going to add up like ever. It's a lot. So it's tough. Yeah. That's a really tough thing.  

Rhandyl:

But I hadn't really thought about that perspective of you. Trying to suppress your you didn't want to get in trouble, you didn't want to act out, or you were just trying to be a good kid so that your parents didn't have to deal with you on top of,  

Deonna:

Yeah, I've never thought of that either.

Rhandyl:

Was that pretty much your whole life? 

Stephanie:

Yeah, I think, they used to joke that my room was the only clean room in the house. Because, she would just ransack it. Literally, like a toddler. Yeah. But I think it was also my room was kind of, my space, and so that was the only space I could control. And so it was very neat, and tidy, and organized, because really nothing else in my life was. Yeah. But I also think it was just my personality to just try to please, and care for her, and care for them, and probably take on a lot more responsibilities than was fair but..

Deonna:

Oh, for sure. I'm witnessing that with my son. He has these responsibilities that none of his friends have and there's nothing you can do about that. And we try to let him be a kid, but his youth died the day his sister got hurt and I know it, and you probably felt the same way. Like a lot of your youth was not typical as your friends, it just, it gets taken from you when you're going through something that hard for sure.

Rhandyl:

So, was there someone specific or anything that helped you the most throughout your journey as a sibling with your sister?

Stephanie:

Honestly, my mom just did a really great job. We actually authored this book together when I was in fifth or sixth grade. It's called My Sister Had Autism and it basically my mom walked me through what autism meant, like in kid terms, and I Illustrated all the pictures and we actually like published it. Oh cool. I don't know that you could still buy it. I don't think people are printing it. But it's like that was something she did really early on. That's cool. 

But then also in the sibling part of that support group that we did, they did a lot of intentional things. So once we got into middle school, we actually went and visited a lot of group homes in the area. And went and looked at the state school because my mom's heart behind it was I don't want you to assume that once we can't care for her, this is all on you. Like there are resources and we want you to know that you're not alone and that we're already forward thinking about that. Yeah, and so honestly, we just had really open communication about all of it. That's good  And that was really influential, and then having families and friends that really get it was monumental. Because you can't understand it until you've lived it.

Deonna:

No, you can't.  

So what would you tell a sibling who's going through a similar situation? Like my son or Rhandyl's son who's not disabled. What would you? 

Stephanie:

I would tell them it truly is the biggest blessing. It's so hard and it's not fair. And your childhood and your life are gonna look a lot different than a lot of people around you, but the lessons that you learn, no one has shown me unconditional love, and how to see the differences in people, and how to be empathetic, and how to notice the little things, It's just kind of instilled in you. And as you become an adult that honestly is like the biggest blessing. And it's hard to see it in the moment and it's definitely hard to see it when you're a kid and when you're a teenager. Oh, yeah. I wouldn't change it if I could.  Yeah. That's, 

Rhandyl:

that's great advice and knowledge right there.

Deonna:

Yeah. It gives me the warm fuzzies. Difficult path, but.

Rhandyl:

So what would you tell parents that were like us, Deonna and I, and like your parents, do you have anything that you would want to tell us? 

Yeah, I think that the biggest thing would first and foremost be to cut yourself some slack. You have been dealt some really difficult cards, and we see all the effort you're putting in, and we see how tired you are, and we see the toll that it puts on your marriage, that it puts on your work life, that it puts on your friendships. We see that. And I wish that I would have told my parents more Jesus's grace is more than sufficient for all of that.

And if you are a parent that's listening to this podcast, then that in and of itself shows that you care, and you're wanting to care for the typically developing sibling as well. So first and foremost, give yourself grace, and secondly I think just honest communication is the biggest thing, and of course make it developmentally appropriate for however old your child is. But we see it, and so don't feel like you have to mask it. We can handle it. We shouldn't have to, but neither should you. Yeah.  

And we are gonna take on a lot of roles that probably aren't fair and that aren't age appropriate, but it's not a mistake. That y'all are the parents of the child with special needs, and it's not a mistake that we are their sibling, and that God's ways are a lot higher than ours, and just know that you're doing a great job, and that we love you, and that we're here for you.  I don't know, I truly think that special needs families  are the most blessed.  

Rhandyl:

 So if you could describe what your sibling taught you like about yourself through this experience. What would it be? 

Stephanie:

She just literally shaped my life. I got into college thinking I was gonna get a psychology degree because I wanted to work with other siblings of people with special needs. But when she got sick and passed, everything changed and I was moving into my senior year of college and I decided I wanted to work with the people with special needs more hands on. And so that's when I switched to OT and changed everything and didn't have the credits I needed and I was already engaged and had to be like, so all of our plans are different now. And I think that's part of the reason that you're such an influential PT, too, of just being able to meet families in that, not from only a professional, but also from a personal area, 

Rhandyl:

Oh yeah, I have such a heart for the families. I feel like I can definitely understand what they're going through and sometimes they're struggling and their perspective or even, the little babies and parents are still just not accepting things. I feel like I can relate to that and just give them the grace and just be there to support them. Yeah, so I totally, I know what you mean. It's definitely changed  my career path as well.

So now, it's a lot different than the world that you grew up in with your sister, obviously. But what resources would you recommend to a sibling in your situation?  

Stephanie:

Honestly, I think just finding other families and other friends for your kids that really get it is like the biggest resource. Now, it was really empowering for me to kind of understand what was going to be available like as my sister got older. Cause the, my sister has passed, but my two closest friends, their siblings are still alive and are in their twenties and thirties. And so just kind of understanding, once they get old enough, the resources out there, like it doesn't have to be  I'm going to take my sibling to live with me for the rest of my life. And I'm going to do that on top of me finding a husband and having kids. If that's what you want to do, that's great, but that's not like the only path. It's not the only option. There are a lot of resources and the resources are only growing every year. And so I do think that it was empowering to understand that a little bit more and not just leave it all up to this obscure like “someday, It's gonna all be on me.” 

Deonna:

Yeah. That's scary. 

Rhandyl:

Yeah. That's a lot on your shoulders for sure. Yeah. I can't even. I can't imagine from your perspective, but I can imagine from your parents perspective, the unknown just, oh my gosh, but they were very proactive, It sounds like they were really great about that.  

Deonna:

Well, and like we've talked to our son, cause in my son's mind, he's “when y'all are dead, I'm going to take care of Allie.” And we're just like, well, and she's so medically fragile that may not even be a problem for him, which really is it's a difficult end no matter what, really, but I've told my son, don't worry about that right now, but it's hard because that's in his mind, he knows that we're getting older and he's, it's like things that you thought about. And so it's good to know. It's good for parents to let their kids off the hook on that a little bit. And so, but that's hard because they still know in the back of their minds, it could fall on them. And that's a big ask.  

Stephanie:

Do you want to hear a funny story kind of along those lines? Yeah. It's one of my favorite stories. So my, we are married now, so let me preface with that, but my then boyfriend.. Pretty much I always in my mind, I was like, Abby and I are a package deal. So, I am not wasting my time with these silly boys that cannot handle that. Yeah. And so I was a freshman in college and we started dating and very soon I was like, I told him about her but he had no background with special needs people at all. Okay, well, let's go to my house you can meet her let's see what happens. And so he pulls up, his little 19 year old self, in his single cab pickup. 

And he pulls up and I walk outside my dad and my sister and she's running around like a giant toddler, right? And she's very boy crazy. And so she immediately runs up and is like hugging him, she's nonverbal and I'm like watching and taking in like how he is whatever and I was like, okay so we're gonna take her somewhere.

So my dad pulls out her wheelchair and I was like, okay that folds up, so fold it up and put it in the back of your truck and I did not help him at all. And my dad just stood there shaking his head at me, like you're being so mean. So he had to figure out how to fold it up by himself, put it in the back of the truck and then I was like, okay, well she's gonna need help like getting in your truck. And so he had to pick her up and put her in his truck and then I was like, she doesn't know how to do her seatbelt. And so he reached across and buckled her in. I love it.=

I got in the bucket seat and we're driving and I was like, okay, she's probably hungry. Let's go to Sonic. Now she eats like an 18 month old, right? So she eats and like that whole inside of his truck is like, there is just food everywhere, and I'm like not cleaning it up. I'm like just seeing like how he's gonna respond. And I was like, let's take her to the zoo. And so we got to the zoo and he had to, unload the wheelchair, get her out and honestly, he handled it all with a lot of grace. She ended up having a seizure while we were at the zoo, and so I did not make him handle that. Yeah. I handled the seizure. That was nice of you. But it was like the biggest test and my parents were always like, you are so mean. But it was one of those things that you grow up thinking about of I need to know if you can hang. I am not wasting my time. And so that's one of my favorite stories. Well, you married him so. I love it. He's still around. Yay. He passed the test. Yeah.  

Deonna:

That is so mean, but funny. Oh, that's awesome. I love that. That's what we've told my son. I'm like, you better marry somebody who's amazing because she's just going to be around all of us, like all the time. And Allie, I just, I don't know. It's going to be funny. I love that. That's a funny story. 

Okay. So. What was your grief journey like after losing your sister and even now? Cause I know, I'm two years without mine and he was my only sibling and everything and so I get that. It's such a loneliness feeling like a lot, or that's how I've been through, but what has your journey been like since losing her and your parents too, like how have y'all handled that?  

Stephanie:

Yeah it was really hard. At the end, we kind of knew it was coming, but you're just never ready. I was 21, and I was so immature, and I had to grow up, but I wasn't ready for that kind of loss.  I think that it definitely led me to change my career path and all these things, and I can see a lot of fruit that's come of it. But honestly, it just, looking back on it, it makes me so thankful for the type of sibling relationship we had.

I just know so many typically developing siblings that have really strange relationships. And that just wasn't our experience. Sure, there were times where she would do something to me and I would get in trouble because I was the typically developing one, or you know we would bicker or something, but honestly like we didn't have any of the fighting, the distance, we were she was just my best friend, like she was just my best friend and I miss her dearly, but I also can see the mercy in it.

Rhandyl:

Especially after the at the end she was suffering so much. Yeah. I don't know maybe kind of weird or morbid to say but t it may have been a God thing that, it was more of a piece for her when she did pass, because you guys saw her for all those months, struggling so much. I'm sure that was a big part of the decision?

Stephanie:

To go on hospice. Yeah. I can't imagine how hard it was for my parents to sign the DNR and things like that. And I remember the day that they did that and how much turmoil that put them in, but it was, it was such a merciful act of God for Him to just take her home at that point. Yeah.

Yeah. And she, she just had a really hard life. And He was honestly merciful to my parents too, cause they were so tired. It affected them really hard, as you could imagine. They sold our house because, she passed in our house and ended up moving away from Abilene but they honestly both got to pursue some things that they never would have before.

And I got really sweet time with them that I wouldn't have before because it, it was probably the first time in our lives that we could just go on vacation or go to dinner or something that didn't have all these contingency plans. And so we got some really sweet years together. Both of my parents have actually passed since then, pretty recently. My sister passed in 2012, and my dad passed in 2021, and my mom passed in 2023.  

Deonna:

Oh my gosh, man, you have had so much back to back, like that is just crazy. Yeah. Oh man. I'm so sorry. I don't even know what to say about that. Yeah. Like honestly, I'm like, oh man,   well, it sounds like they taught you so much in that time, that you're going to carry on.  

Rhandyl:

Yeah, they sound like they were wonderful parents. They were. For sure. So, what's the best thing that,  has came from your experience in life thus far?

Growing up with a sister with special needs her passing and now, Your parents passing and you of course you have your husband in your immediate family your kids, but The whole experience  like what's the best thing so far?

Stephanie:

So I actually just a few months ago got another tattoo- It is a picture of an oak tree. It says Isaiah 61:3 under it. You can look up that verse, but it is basically talking about that those who mourn would become oaks of righteousness. planted beside the still waters. So, the suffering wasn't for nothing. I want my family to be so strongly rooted in the Lord that we can be a refuge to other people that are suffering.

So whether it's other people that are walking through loss, other people that are walking through disabilities or special needs or just unknown times, we wouldn't know the closeness of Jesus, had that not happened. Right. And, that's really just what it's all about. Yeah. Knowing Jesus, and pointing people to Jesus I don't think I would be able to do that in the same way. Or want to, honestly, If that hadn't been my journey. 

Deonna:

Well, when Rhandyl described to me that we were going to be talking to this girl who had lost her only sibling and who grew up with a disabled kid, I'm like, Oh my gosh, this is too close to home for me. I don't know if I can do this. This is going to be hard, but I'm really glad we talked to you because even though you've been through such difficult things, I can tell that you are great at your job, and you're really inspiring a lot of people through all the hardships that you've had. So I'm so thankful that Rhandyl knows you and that we got to talk to you today.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.